mental health | autism | culture & well being

People are more than their diagnoses.

“It was this prognosis of doom, this life sentence, this death before death that I instinctively rejected when the words “You are wrong” formed silently within me. With the wisdom of hindsight I understand why this moment in the psychiatrist’s office was a major turning point in my recovery process. When I rejected the prognosis of doom I simultaneously affirmed my worth and dignity.”

“And just as quickly as I turned away from the prophecy of doom, I found myself asking– so now what? In other words, I turned away from a hopeless path but also, at the same time, had to turn into something.”

Pat Deegan

The narrative of Pat Deegan recounting her own recovery journey from a place of deficit-based hopeless diagnosis has long inspired me, both personally and more recently, professionally. Pat’s own recovery mission, to ‘become a doctor and make the mental health system that abused her work properly’ is similar to what I wish to achieve for autistic women who have been through a similarly negative experience with their own mental health and diagnosis. I have found a similar inspiration in taking the crappy life experiences I have had, which have nonetheless also been transformative, and delivered to me far more meaning and purpose than I could ever have found in my old life, and make something better for others out of them.

Professionally this is shaping into a PhD proposal that I hope will enable autistic women to be able to think more positively about themselves and their experiences or history. I wish to create an alternative narrative to that of a medicalised diagnosis; of which even the name makes you sound diseased. Most importantly I want this to be something that all women who identify as autistic can utilise, not just those who come to this place via a medical diagnosis. In this way, I am beginning to open out the idea of self-identification as a valid means of describing oneself as autistic as well as having the same bestowed by a doctor whose own perceptions of just what ‘autism’ is might be skewed by the research bias towards gendered male presentation anyway.

I want to focus on women because I think from what I have experienced and what others have told me about, that this is the group that gets one of the bummest deals of all bum deals. In thinking about women I have also wrestled with the concept of gender and so have had to accept that just as I find it intolerable that clinicians get to decide who is and is not autistic so it is not my place as a researcher to decide who is a woman or not. This is part of my decision to work within the participatory paradigm. Not only do I involve others with lived experience at every stage of the project, but I also have to accept that they will decide the factors of the research question itself. If someone with cis-made genitals identifies as a woman some of all of the time who am I to denigrate their primary experience?